PWS

We flew home early last Saturday morning, Oscar on tylenol and advil, me just on edge. Dr. C had gone way out of her way to see Oscar the day before and to check on his wound, which reassured me, but my mind was still spinning about the flight. Would he be comfortable? Could he manage … Continue reading Home! A’s! School!

GrandMary and I are getting a little punchy here. At times we feel like we're running a skilled nursing center: dispensing multiple meds up to three times per day, changing bandages, fitting in exercise, bathing, and healthy meals. Yesterday, we had Oscar sitting on the shower bench washing his underarms—left, right, left, right. I lost count, … Continue reading that healing feeling

Oscar finally got to check something big off his Summer List yesterday, post-surgery mini-golfing. He'd been eager to go ever since he'd gotten out of the hospital, begging us last Saturday, a mere two days post release. Dr. C, probably incredulous that we were considering it, said, "Maybe in a week." Paul and I were … Continue reading Mini-Golfing

It's been two weeks since Oscar's surgery and I alternate between feeling like he's having a record-breaking recovery and worrying that he won't be strong enough to fly home next Saturday as planned. Of course the truth lies in between. We're up in Connecticut now, at GrandMary and Grandpa's Lake House, having received the okay … Continue reading day 14

I got to the hospital early yesterday—my eyes had popped open at 5:14am, my brain and heart already racing with all the unknowns. Did Oscar have Central Adrenal Insufficiency? What if he did need surgery to resolve the pneumothorax*? Paul and Oscar were already awake when I arrived—the schedule of meds and x-rays prohibits more than … Continue reading day 7 adventures

Oscar's chest tube is still in—he's stopped draining fluid but the tube is sucking air, lots of air, and we can't figure out where it's coming from. From the incision site, or from the lung? Every possible explanation is "extremely unlikely" but clearly something is going on. He's bubbling away, day and night, like one … Continue reading the great experiment

So yeah, we're still in the hospital. Last time Oscar was released on day 4, and I'm pretty sure we'd have climbed out our 3rd floor window and escaped into Central Park if we'd not been let out the front door that day. Double tethers are more complicated than singles so we expected recovery to … Continue reading day 5